I am Gleason 4+3 , ECE, PSMA PET -No spread out of prostate- had 20 tx of IMRT at UCLA , (finished March 1) am on my 4th and last month of orgovyx (24 days left).....and 3 month post treatment.
Just had my blood test yesterday which included results of PSA 0.00, and Testosterone 0.00.
Given my PSA is 0.00 ( is that what is considered undetectable?) am I now considered "cured"? and should I continue and finish out my orgovyx until the end of the month?
Lastly , I am still having urinary "nocturia" 5-6 x a night getting up (2 months post radiation treatment) , when does that usually end?
When should I expect my Testosterone to return to normal if I stop the Orgovyx ?
TIA -all responses welcomed!
Written by
JWS13
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If "cure" was that easy, there wouldn't be anyone here to respond to your post. Undetectable PSA under castration Testosterone level is the normal thing to expect. The acid test is the PSA count when Testosterone regains normal levels. Some docs will tell you that you have been "cured" if your PSA remains at the border of detectability 5 years without treatment.
I had robotic surgery with my PSA remaining at zero for 11 years. At my last visit, my urologist said he would no longer need to see me, but he still hesitated to use the word "cured." He told me to get a PSA test as part of my annual physical exam.
I had a RP in 2009. PSA was 0.0 in the ensuing years. In 2018 PSA was .18. Dr said if next test came in at .2 they would recommend salvage radiation. Came in at .3. Under went salvage radiation with no change in subsequent PSA test. Monitored in every 3 months with ultra sensitive psa test. Slowly climbing, except when on keto diet. Has risen to .76 and located 2 tumors in lymph nodes and am in the middle of 5 session SBRT now.
We will monitor PSA every 3 months and do another pet/ct PSMA scan if warranted. Holding off on drugs for now.
Before prostate cancer I had Testicular Cancer. Cured for the first came came after 10 years of no evidence of disease and literally no treatments for that duration.
See TA's response regarding cure. I had EBRT and brachy - it took a good 6 months or so for the nocturia to settle down. Tamulosin was a great help. At the height I would take two doses at night. Eventually settled to one dose, and then weened off it over a couple weeks. Good luck
I finished SBRT at UCLA in September. Just this week, I just celebrated sleeping through night and not getting up to urinate. So my nocturia finally resolved. The Flomax helped, but beware low blood pressure if combined with Cialis.
You should go with your instinct. If you let others make your decisions for you, you will remain chemically castrated indefinitely. I saw my VA doctor today, less than 2 months after my RP, and i told him that when the incontinence is fixed and the 1st psa test after surgery indicates undetectable levels, I'm going back on testosterone, with a rx or I'll get it illegally. Having been on Androgel for over 20 years, I had a pretty active life, was pretty happy overall and slightly underweight. Since the surgery, i've not left my house because of the incontinence except for grocery shopping and doctors, i'm no longer even remotely interested in sex, i've gained 10 pounds and am now afraid of diabetes and breaking bones and i'm avoiding my friends, mostly because of the incontinence, but also because i'm nearly despondent. My testosterone level 1 month after coming off the androgel was 74. I've now been off it for 5 months. I have no idea what the level is but my body has never made enough testosterone on its own. If it were possible, I would take my diseased prostate back and live it out that way. But the decision is for you to make and not anyone else on here. Are you relatively content with your life? Can you maintain a healthy and happy life without testosterone? How important is it to you to be cancer free? Are you willing to risk a return to detectable levels if you stop the castration medication? Its up to you. Weigh your options carefully. Maybe my own feelings will change once my continence returns (and I have confidence it will since i'm already down to 2, sometimes 3, pads a day, and no pads in bed.) Maybe when the doctor gives me the go ahead to get on my mountain bike again, I can kick up natural serotonin. Right now, TikTok is taking up a lot of my time and its not even fun. But I will go back on the Androgel, with or without a prescription.
Sorry to hear that. Yep, I agree with that - it's the balance of what you want / what you're prepared to do/risk to get there. IMO your QOL is as important as some statistical longevity figure. Hope things turn around in your favor soon.
my testosterone level as of may 15 is 38. i moved up my urology appointment 4 weeks ahead. So, will get my first post-op psa test in a couple of weeks. if the level is undetectable, i'm not asking to be placed back on androgel. I will be demanding it. Weighing the pros and cons, I'd rather live a shorter happy life than a miserable longer life. But there is evidence that testosterone replacement is beneficial for men with hypogonadism and lower T levels can actually be more harmful and increase the risk of the cancer returning. Who knows? not enough studies. Hope it all works out for you, whatever you decide.
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